06/21/2018

The parents of Charlie Gard have been working with NHS medical professionals, ethicists, and legal experts to develop draft legislation that will prevent long and painful conflicts between hospitals and families with sick children (BBC News).

The bill provides three key changes to improve existing legislation. Charlie’s Law will:

1. Prevent cases reaching courtNo one wants to see disagreements over the care of seriously ill children to be decided in the courts. The legislation helps prevent cases from reaching court by providing access to clinical ethics committees throughout NHS hospitals, access to medical mediation where there are differences of opinion, and speedy access to all medical records including raw data.

2. Providing advice and support for familiesCharlie’s Law helps parents get the support they need by providing for better access to advice on ethics and their rights, independent second opinions, and legal aid to ensure families do not face having to pay for costly legal representation and are not forced to rely on funding from outside interest groups.

3. Protect parental rightsCharlie’s Law will protect parental rights in these cases by restricting court involvement to cases where there is a risk of significant harm to the child.